Rachel licked an apple!

Rachel licked an apple today. She put it up to her mouth and stuck her tongue on it. I'm not talking about just the skin of the apple. At first, she played with it and put it to her mouth a few times. Then she handed it to me and said, "open." At first I didn't think she was serious, and I asked her if she wanted me to cut it. She said, "open" again. So I cut a peice off and she started playing with it and putting it back on the apple like a puzzle peice. She would touch the inside of the apple and say, "wet" and "water." She was really into it and excited about it. She then put it up to her mouth and out came her tongue.... then she licked it! I was beyond surprised.  I just had to whip out my phone and snap a quick picture of this monumental moment! 

I never thought I'd be so excited for my child licking an apple. But hey, this is just super awesome. Any progress, no matter how small, is just huge around here. Rachel's second therapy session on Friday went really well. I left the session with peace and excitement in my heart. Praise the Lord. He lead us to the right place and the right therapist. I am so thankful. 

Bob called me from the store on his way home from work and asked me if we needed anything. Of course I said, "apples. bring more apples."

The good news post

Last week was rough. Really rough. My worry for Rachel and her eating issues are a little better now, but we're not out of the woods yet. We won't be for quite some time. After a lot of heart to hearts with her therapy team, including her feeding therapist that she most recently had, we decided to put her in "Sequential Oral Sensory" (SOS) feeding therapy. 

We've actually been discussing this type of therapy for a while. In fact, a couple of weeks ago, there was an SOS training seminar and conference in the bay area that I wanted to go to. Her OT was not able to attend, and since our services will end on the girls' 3rd birthday, our OT wanted me to get training in this feeding therapy technique. However, we found out that they would not allow non-professionals (aka parents that aren't therapists) to attend this conference. I was really bummed. 

When her food strike happened, I panicked. She was barely getting 300-500 calories per day, and that included her milk intake. What mother wouldn't be worried? I started researching every option available. I was willing to travel and pay anything just to find her some help. I talked with the Star Center in Colorado. I also consulted Los Altos Feeding Clinic. Both seemed like good options. The biggest issue with those two places was that we would need to spend weeks away from home. As a mother of triplets, that just wouldn't work. Then I got a referral from a friend of a friend to an SOS feeding therapy center right here in our area. Our most recent feeding therapist, Stephanie, agreed this would be a great place for Rachel. I wish I could still use Stephanie, but we all feel like it's best for Rachel to have the therapy outside of home and with me not in the room. During the time we were working with Stephanie, it was all in our home with distractions (aka triplets). Also, we both feel that Rach was just not ready for feeding therapy when we did it. Her speech, both receptive and expressive, are greatly improved now. I am certain we are ready for this fresh start. She is so interested in food, but you can see the fear in her eyes. It breaks my heart for her. I look forward to seeing her happy little face around food. 

She had her first session Friday afternoon with Julie, her new therapist. It went pretty well. I have to admit I walked into the office as a complete skeptic. We've been through so much with this issue. I just thought it would go the same as it always has. I was pleasantly surprised. Julie is amazing. She starts with a sensory warm up and then slowly gets her ready for the transition into the feeding room. Once in the feeding room, Mommy says bye bye and see you in a little while. Then I go to another room and watch. I can see and hear everything that is going on, but Rachel cannot see me. What impressed me was Julie's ability to stay completely calm and flat during the meltdowns. And yes, there were a few of them. The difference was that Julie was able to keep Rachel's interest and bring her back. Usually, we had to end a session when the meltdowns got out of control. 

SOS therapy is meant for children with Sensory Processing Disorder. I think we're in the right place. Rachel was all smiles and still happy to play with Julie even after the hard part (being presented with a new food) was over.  I left the appointment feeling happy and very optimistic about making progress. I'm told that it's going to take 4-6 months to see some good progress and about a year for her to fully recover from her food anxiety. I'm really happy to have a fresh start at this process. I'm not happy about how expensive it is, but we are making it work because our daughter's health depends on it! 

We are feeling all of your prayers! I have received so many emails in the past week from my friends and family telling me they are praying for us. We are also on the prayer lists at four churches. We are blessed with so many prayer warriors, and I am so grateful. 

Rachel is eating just one 6 ounce jar of strawberry banana baby food per day. The rest of her diet consists of organic animal crackers, bbq baked lays, and gerber yogurt melts. She also drinks about 20 ounces of milk per day and a couple of cups of juice. Sometimes I can even get her to drink vegetable juice. 

Also, she has made a giant leap forward by drinking out of a straw. This may seem like a small accomplishment to some, but for her THIS IS HUGE! Just allowing a straw into her mouth took so much practice and courage. You can see that she wasn't quite comfortable at first, but now she is mastering it. 

 

I bought some fruit smoothies tonight that are not very thick. I'm going to see if I can get her to drink it tomorrow. I'm hoping she will because then I could sneak much needed nutrition into a smoothie. 

So thank you everyone for your prayers and support. It's not always the easiest thing to let go of the worry and trust that God will take care of you. I know He will. He has certainly heard all of our prayers and has lead us in the right direction. 

Hey, look! A Blog Post

Once again, I have neglected my blog. The last month has, of course, been a busy one.

I'll start with my super fun trip to Portland/Vancouver area in mid-Oct. My cousin (and BFF) lives up there, and I hadn't seen her in over a year, so I am so happy I finally got over my fear of flying and got up there. I really lucked out. One of my close triplet mommy friends's husband is a Southwest Airlines Captain and so she hooked me up with a free ticket. It was a stand by ticket, but I'll stand by for a free trip to see my bestie any time! I flew up on a Friday night and home very early Monday morning. We had so much fun. I finally got to see Roloff Farm. I've been a fan of the "Little People, Big World" TLC show for years, so it was a treat to get to see their farm and go to their pumpkin patch. It did feel a bit weird going to a pumpkin patch without my girls, but it was fun to see my cousin's little one enjoy the "punkins." My cuz and I went to the movies and out for late night munchies at a diner, followed by shopping the next day. Fred Meyer is my new favorite store to buy kid's clothes. It was also my first time ever flying alone. I am one of "those" people who has panic attacks on airplanes. I did really well this time and stayed panic attack free. The glass of wine on the way up there sure helped! I can't wait to fly up there for another weekend again!

What else has been going on? We finally closed on a house for Bob's mom. The last house we were in escrow on fell through. It was actually a blessing in disguise because we were able to find her a better house in an area much closer to our home. Right now, she is living with us but will be all moved in to her house probably around the first of the new year. I think we're all relieved that the search for another house is done. We'd been looking since April and put countless offers out there. Whew!

So Morgan has really developed so well with her language skills. I'm not in denial about her PDD-NOS diagnoses, but I wonder if she would still get that diagnoses if she were retested today. She has grown so much, it's almost as if she is a different kid. She's looking at me when she's talking. She asks me for things. She brings me toys she is interested in. These are all things she didn't do just two months ago. Only time will tell, but I am hopeful that she'll continue to blossom.

Our biggest concern right now is Rachel's feeding issues. In the past three days, her eating has gone from bad to worse. She is eating less than 500 calories a day and it's really scaring me. She's refusing her baby food and is down to 3-4 other foods, none of them nutritious. I really wonder if she is on the brink of change. Like, maybe she is tired of baby food. I think that is a real possibility. My thought is that she is afraid to try something new. I'm really not sure. It's like she doesn't even get hungry. Also, in November,  her pediatrician decided to do a full blood count and we found that her iron stores are low. She is not anemic but is in danger of becoming anemic. I started her on a liquid multi-vitamin called PolyVisol with Iron. She only took one dose of it a few nights ago. The next day she didn't want to eat much. I wondered if the iron was upsetting her stomach so I took her off it. I don't think that's the case though since the last two days have been exactly the same. She just doesn't want to eat. Her feeding issues have just been going downhill. She has gone from eating a variety of baby foods to just a few kinds. Now she won't even eat her "go to" foods. I am at a loss. I don't know what to do. I've been doing a little online research and am looking for a new feeding therapist or feeding program.

I've found a few options. There is a new type of feeding therapy for kids with Sensory Processing Disorder, which is what Rachel was diagnosed with. It's called SOS. The only issue is that the therapy is super expensive. There is also an intensive feeding program in Colorado I'm looking in to. I've got a call out to just about every place in town, one place in the bay area, and then the Star Center in Colorado. I'm willing to do whatever it takes to get Rachel the help she needs. She's getting dark circles under her eyes and I know she's not getting what she needs. She has an appointment with her doctor on Friday morning. I'm trying to use every option that I have no matter what the cost. I'm done sitting back and just hoping things will get better.

I put this out on Facebook last night. A call for prayer! So if you would pray for my little girl, we would be grateful. I am giving this up to God. I believe He will work this out for us and lead us in the right path to help our Rachel!

So that's our update! Hope everyone is enjoying the Christmas season. I'm too tired to proof read tonight... and I took Nyquil right before I started typing. Darn cold... I've had it for four days now. ugh!

Park Play Date

We had a fun park play date with the girls' triplet boyfriends last week. My friend, Deana and I were very proud of ourselves for wrangling six toddlers with just the two of us. We actually make a really good team. She mans one end of the park while I work the other. No toddler left behind and we just constantly count to six!  hahahaha...... They usually end up staying really close to each other. 

The kiddos did really well. We were at the park for just about an hour and we didn't have one meltdown. My girls are getting to know D, and her boys are getting to know me. It's all working out great. We really enjoy hanging with these sweet boys! 

Back to reality

Morgan had her psych evaluation on Tuesday morning. We were surprised, but then also not surprised that she was diagnosed with PDD-NOS. I think I was in denial leading up to her appointment. It's just the more I read about autism and PDD-NOS, the more I started to associate Morgan with some of these characteristics.

Here is the definition of PDD-NOS. This is copied from the Autism Speaks website.

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.

PDD-NOS may be thought of as “subthreshold autism," or a diagnosis one can give a person who has “atypical symptomatology.” ²  In other words, when someone has autistic characteristics but some of their symptoms are mild, or they have symptoms in one area (like social deficits), but none in another key area (like restricted, repetitive behaviors), they may be given the PDD-NOS label.

The last 24 hours have been very emotional. I've cried, been angry, felt confused, and have been in denial. Then I get mad or sad again. It's been a tough pill to swallow. The good thing in all this is that Dr. M isn't 100% confident that this is, for sure, the right diagnoses long term. She fits the description right now. However, he thinks she is borderline enough that it could go either way as she develops. He has recommended that we re-test in about 2 years right before she turns 5.

Right now, I'm trying to just take all of this in. I wanted to be able to share the reasons why she was diagnosed, but I don't have a copy of the psychologists report yet. Once I get the report, I can really get into the reasoning behind it. Unfortunately, after talking extensively with Dr. M, it just seems like he's right on the money with this. I hope with all my heart that he is wrong and that she will make amazing strides with continued therapy. He has seen cases where it's just tough to diagnose in a 2 year old and that after a couple of years, the diagnoses doesn't make sense. But then he's also seen cases where it has turned into a full autism diagnoses.

This will probably place her in the same 4 day a week preschool program as Rachel. They are both categorized as "severely delayed" with their language skills. Dr. M feels like Morgan is way too advanced to place her in the class with the autistic children. I have a call out to the school district to discuss this as well as an IFSP meeting with the girls' therapy team and case worker next week. I am feeling a little bit better after talking this all out with Amy, the girls' OT. She and I have come up with some goals and a plan as to how we want to move forward with their therapies. We plan on making the most of the last 3 1/2 months we still have before their services are transferred.

I will post in more detail as soon as I get Morgan's report. I can't think of everything off the top of my head right now so I'm not going to try.

Sophia had her evaluation today. She soared through it with flying colors. She has some mild sensory issues and is classified as just having a "mild speech delay," which makes me happy.

Right now, the plan is to take this one day at a time. I'm seeking support through our local Warmline chapter that offers help for families with special needs children. It's too much to try to look too far into the future at this point. "One day at a time" is the new motto!

Good news!!!

I can't even begin to express with words how thankful I am that Rachel does not have autism. She also does not have PDD-NOS or any other type of PDD. She does have sensory processing disorder as well as auditory issues and language delays. These are all things that can be treated through the therapy she is already receiving.

For the first time in over a year, I am feeling free of the stress and worry that I had for her. It's been a long road with my precious Rachel.  Last year at this time, we were going through worry from the tumor on her ankle. There were several months of waiting and thinking about biopsy results. At the same time, she was being seen by several therapists that were all concerned because she shows signs of autism. The question was always there even though a lot of her characteristics and behaviors were unlike those of children with autism. But then of course, some of her characteristics were in line with them. I'm so glad that the question has finally been answered once and for all. Now we can focus on the sensory, auditory, and language issues.

Knowing that Rachel was not diagnosed takes away the majority of concern that I had for Sophia and Morgan. The psychologist and the girls' therapy team still want them to undergo the same testing. They will likely not be diagnosed, but just by doing this testing, it will help us to better understand the areas we need to work on. Their appointments are next week.

I am really proud of Rachel for doing so well. Her evaluation lasted just about 3 hours. She didn't have any meltdowns or tantrums. She was such a good girl, plus she had a room full of toys all to herself. About 2 hours in, she did say... "A truck, cars, home." That meant she wanted to go home in Daddy's truck.

One of the main reasons several of the therapists thought she could have autism or PDD-NOS is because of her eating issues. Dr. M explained that children with the same sensory processing disorder have issues with food and all of the different textures. Some of these children are even mis-diagnosed with autism because their symptoms are alike. The good news is that there is a light at the end of the tunnel. When Rachel's language skills improve, we will be able to talk about foods and even let her help choose what she would like to try. We're told it's not going to be an easy battle, but that she will improve with time.

I am very relieved and it really feels as if a huge weight has been lifted off of my chest. I feel like now that we know what she is dealing with, we will be able to help her now and make some good progress.

When we left the psychologist's office, I had a good cry. It was definitely much needed relief for my baby girl who has been through enough in her almost 3 years! I look forward to watching her blossom when she starts school in February!

Ready or not....

In a few days, we start the process of the girls' pysch evaluations to determine if they are on the autism spectrum,  have aspergers, PDD-NOS, or any other diagnoses to try and find out what, if anything, is causing their developmental and speech delays.

Rachel has the first appointment on Wednesday. Needless to say, my stomach is in knots and I have a lot of anxiety about it. I know this isn't going to change who she is or change our life right now. If anything, I think some sort of diagnoses would only help us to her her. I just can't even describe the sense of overwhelming feelings I am having about this.

It's not just Rachel that I have anxiety about. It's all three. They are my babies. Dealing with the fact that one or all of them could be labeled as "special needs," is heart breaking. I know things could be worse, so I am of course incredibly thankful for their health. But I just want the best for my girls as all mothers would. I don't want them to struggle.

I had a meeting last week with two of the girls' therapists. They know how stressed out I am over the testing and were discussing what to expect as well as how to navigate the girls' upcoming IEP meeting with the school district. This meeting made me realize what an awesome team we have fighting for our girls. Both of the girls' OT's have offered to keep in contact with me after the girls turn three and will no longer be in their program. They want to be there for us to offer advice or just a comforting ear. I am so thankful for them. I know we aren't alone in this.

They also referred me to a local support network for parents of children with special needs. I've already made friends with one of the mom's (Kathy)  in the girls' play gym class who is a member of the network. I'm going to attend one of their get togethers so I can connect with some other local moms going through some of the same things we are. My multiples club has been such a great support to me so I know a similar group for parents of children like mine will be helpful. We've already had a couple of play dates with Kathy and her son, and it's been just what I've needed to feel a sense of normalcy. I know I've said that it's hard not to compare the girls to other toddlers their age, but I always do. On these recent play dates,  I found myself so relaxed and happy hanging out with another mom who totally "gets it" with what we are going through. She and her son are going through the same thing. Both of us mentioned that it felt good not to have to see "normal developing toddlers the same age" and be comparing them the whole time to ours that are somewhat behind.  In fact, Rachel will be in the same preschool program as Kathy's son since we are practically neighbors. I'm glad to have met her.

Sophia and Morgan's appointments are next week. I'm getting myself mentally prepared for whatever news comes our way. I'm going to do my best to remain optimistic.

However, if I eat lots of brownies this week........... um..... I can't be held accountable for it!